Rett syndrome is a rare genetic condition that affects how the brain develops, leading to ongoing challenges with movement, communication, and coordination. It primarily affects girls and usually begins to show its effects after a baby’s first few months of life.

At first, a child with Rett syndrome may appear to grow and behave normally. However, after the first six months, she gradually begins to lose abilities she once had — such as crawling, walking, speaking, or using her hands. As time goes on, the loss of muscle control becomes more noticeable. Tasks that were once simple start to feel difficult or impossible, and natural, purposeful hand movements are replaced by repetitive actions like rubbing, clapping, or tapping.

Rett syndrome brings a wide range of challenges. Many children develop seizures, intellectual disabilities, and difficulties with balance and coordination. Breathing problems, unusual eye movements and sleep disturbances can also appear, making daily life more demanding for both the child and her family. Emotional symptoms such as irritability, anxiety and sudden crying spells often develop as well. In some cases, the spine may curve abnormally, and heart rhythm problems may arise, which can be life-threatening.

The condition typically becomes most noticeable between 12 and 18 months of age, although the rate and severity of symptoms differ from child to child. For some, language and interaction decrease suddenly, while others experience a gradual change. Over time, many children learn to use eye contact and nonverbal communication again, finding new ways to express themselves despite the challenges.

Although there is currently no cure for Rett syndrome, research continues to explore promising treatment options. Today’s care focuses on improving movement, supporting communication, managing seizures and helping families navigate the physical and emotional demands of the condition. With the right support, children and adults living with Rett syndrome can achieve better comfort, stability, and quality of life.